That baby is definetly having infantile spasms. Seizures are way different though. My son has had seizure since he was 4 months old and today marks the 4 year mark. I hope and pray your baby boy gets better and these go away soon!!!! You will be in my prayers :)
my son has TS and he also had infantile spasms as a baby, its just awful when you can do nothing but watch them suffer. He had vigabatrin but it didnt really help, thankfully he grew out of them
Hi my baby has been doing this exact thing every doctor was saying it was colic but it wasn't until they saw it for themselves we got diagnosed with infantile spasms now on hi dose if steroids until they can find a suitable medication for him :(
Hi...I realize this was posted a long time ago but I was wondering how your son is doing. My daughter had infantile spasms and Vigabatrin was a miracle drug for her. She has TSC and is developing great! We go to a hospital in Boston and it is wonderful...I am thankful for our neurologist!!
my 6 month kid has those similar jerks... only stronger... he's on valproic acid and phenobarbital... i dont know how i could deal with it... i pity my child but i cant do anything....i feel so hopeless and helpless
my daughter is 11 weeks and she does this same thing but the pediatrician said she's prolly fine but im still worried what did you do to get them to diagnose your baby?
My daughter was recently diagnosed with infantil spasms and is currently on acth injections. The other meds referenced I've never heard of before and i wonder should i ack my doc about those. She hasn't had any spasms since she started the treatment but Ive been reading up on it and saw alot about how kids develop mental retardation from it. Has anyone experienced this?
Was curious if your baby outgrew these and/or if the Sabril/Vigabatrin worked? Our little boy had them beginning at 6 months. He outgrew them when he was 4 (just when we thought they would never go away). Sabril/Vigabatrin did work for him, but we had to continue to up the dosage at one point. Your video brought back so many memories of how scared we were and brought tears to my eyes. I pray that your little guy is over them.
hello my son is 4yrs old and has been having spasms since he was also 6months old. he does see a neurologist and has been on medication for years now. should i tell these to the doctor?? it is so hard to see my son go through this.
Your video brings back hard memories of when our daughter was having IS. I'll pray that the Vigabatrin works. It did for our daughter, but it took a while and we really had to use very high doses. Our daughter doesn't have TS, and we never could figure out what caused hers.
Hi, my son has this, and he has been on Vigabatrin for 2 days. Already, the spasms have subsided, but he is very sleepy. He is only taking 250 ml for the first week, and is very sleepy. I was wondering what your daughter was on.
Hi....My son is 7 months old, and also has spasms like this.....but he's never been diagnosed with anything. How did you get your Dr.'s to listen to you? I just posted a video of my son on here....hoping that someone will have some answers. Thank you for posting yours. I'm scared out of my mind right now, as I watch all these videos.
Hi My daughter just got diagnosed with infantile spasm on sunday. I took her to the Er when she did a few time saturday. Whne i went to the Er they did a lot of test and it came up normal. to be honesty if my daughter did not do the spasam in front of the doctor they would send me home. she takck the ACTH now for six weeks and we found out what going to happened. you shoud a go see a other doctor
does this affect his development in the future??... My nephew just did a 1dayEEG and they detected he was having seizures but said they couldn't know what the problem was or anything for a while, and his seizures kind of look like that, and it usually happens when he's worked up or upset, his arm freezes and face distorts.
my son also so used the great med it worked for him in hours thank god my doc said 1 1/2 pill at first then she carefully decreased it by looking at his EEG's keep up the great work !! im part of thr tsc family too and we are strong god bless
My heart breaks every time I watch these videos. Our daughter has seizures. They are a bit better now, after a few years of trying different seizure meds, and going on the Ketogenic Diet. But when she was little, she had spasms just like this.
I wish you all the best and you are in my prayers. May the Lord protect and save your shinnning star, your son. The struggle is going to be very frustrating but please never lose hope for many of are us standing by and rooting for you.
Thank you for posting the video. My son, Luca, died from complications of Tuberous Sclerosis (rhabdomyoma). I have a newborn daughter, and am glad to actually see what IS look like so I can be aware. I hope your precious boy responds to the medicine soon.
There is an acupressure point that is very famous for stopping convulsions. It is called Shui gou, Ren Zhong, Du 26, or GV 26. It is located on the philtrum, 1/3 the distance from the nose and the top of the lip. Give it a try if you wish, but make sure you talk to a qualified acupuncturist that specializes in pediatrics to locate the point correctly and apply the correct pressure so that you do not injure yourself or your child.
These definatly look like mild infantile spasms to me Our little one had them but more violent now thankfully under control using Vigabatrin.Hope you get control soon best of luck.
no he is not crying because he wants to be picked up he has tsc and is having a cluster of infantile spasms if you watched all of this video. he has seizures nearly everyday and I spend all day while my older kids are off at school holding him ,loving him and helping him along developmentally
That person obviously has not had a child with infantile spasms. Our little boy had clusters as well. They were identical to these your little boy is having. He has outgrown them (he is now 7). I hope your little boy is over them now. Vigabatrin/Sabril was a miracle drug until he did outgrow them though. Blessings to you and your family.
Bless his heart. So scary to watch and so sad for baby. My daughter has a genetic condition and had a grand mal seizure one time. It was such an awful thing and I can't imagine having to deal with seizures on a regular basis. Your little boy is ADORABLE. Hoping the meds work for him.
This is heart breaking. My son has severe seizure disorders.I am in the process of making numerous vidoes of him seizing. He is being evaluated for hemispherectomy surgery. please visit my profile.
I am not familiar with TS, but my daughter had spasms just like this as a baby. She is almost 3 and has outgrown them (Thank God and knock wood). It is only tonight that I've ever seen other examples. I happened to see a Discovery Medical TV show and grabbed my husband - look that's exactly what Becca had. They called it infantile spasm. So now I've been surfing the web looking it up and seeing other kids do exactly what she did. Becca also has Down syndrome. Best wishes to you.
Hmm... These are similar to the seizures caused by MoyaMoya... interesting. *Goes off to do research.* :) Good luck with medication for the little one, he's gorgeous.
I am so sorry to see you and your little one go through that. I have three children with TSC have you heard of the TS Alliance?? They have a wonderful emailing list you could join and talk with other TS moms. I hope vigabatrin works for you. I will pray for you and your family :)
That baby is definetly having infantile spasms. Seizures are way different though. My son has had seizure since he was 4 months old and today marks the 4 year mark. I hope and pray your baby boy gets better and these go away soon!!!! You will be in my prayers :)
dravet07 2 months ago
Don't give up, poor baby and mama
LADDERNJ 5 months ago
my son has TS and he also had infantile spasms as a baby, its just awful when you can do nothing but watch them suffer. He had vigabatrin but it didnt really help, thankfully he grew out of them
julieandjason4 7 months ago
Hi my baby has been doing this exact thing every doctor was saying it was colic but it wasn't until they saw it for themselves we got diagnosed with infantile spasms now on hi dose if steroids until they can find a suitable medication for him :(
sruasonid 7 months ago
I hope he get better,
This book might be useful, you can find it on online book stores.
Infantile Spasms: Diagnosis, Management and Prognosis
EBouhendi 8 months ago
poor baby!!!! in nursing school learning about this aww im so sorry
smoochy0711 11 months ago
@mimi0674 the spasms occur quickly (a myoclonic jerk) at 0:14, 0:36, 0:52...
ryeemitch 1 year ago
hi, may i know how is your son condition now? is he recover or cont. with medicine?
irenewong2007 1 year ago
Hi...I realize this was posted a long time ago but I was wondering how your son is doing. My daughter had infantile spasms and Vigabatrin was a miracle drug for her. She has TSC and is developing great! We go to a hospital in Boston and it is wonderful...I am thankful for our neurologist!!
amysarahh 2 years ago
my 6 month kid has those similar jerks... only stronger... he's on valproic acid and phenobarbital... i dont know how i could deal with it... i pity my child but i cant do anything....i feel so hopeless and helpless
jamkulit 2 years ago
my daughter is 11 weeks and she does this same thing but the pediatrician said she's prolly fine but im still worried what did you do to get them to diagnose your baby?
historyofscars 2 years ago
omg i would be scared if i had a baby and he/she was doing that....thats so scary too
shuuha2009 2 years ago
I had west's syndrome when I was 5 months old but recently tested as 129 in an official IQ test. Dont give up hope about your child's future.
beastinblack 2 years ago 17
My daughter was recently diagnosed with infantil spasms and is currently on acth injections. The other meds referenced I've never heard of before and i wonder should i ack my doc about those. She hasn't had any spasms since she started the treatment but Ive been reading up on it and saw alot about how kids develop mental retardation from it. Has anyone experienced this?
araccot 2 years ago
Was curious if your baby outgrew these and/or if the Sabril/Vigabatrin worked? Our little boy had them beginning at 6 months. He outgrew them when he was 4 (just when we thought they would never go away). Sabril/Vigabatrin did work for him, but we had to continue to up the dosage at one point. Your video brought back so many memories of how scared we were and brought tears to my eyes. I pray that your little guy is over them.
mspahr23 3 years ago
hello my son is 4yrs old and has been having spasms since he was also 6months old. he does see a neurologist and has been on medication for years now. should i tell these to the doctor?? it is so hard to see my son go through this.
Res1nHL 2 years ago
Hi my son is a year old and he has had IS since birth. How is your child doing now?
lola2008lola 2 years ago
Your video brings back hard memories of when our daughter was having IS. I'll pray that the Vigabatrin works. It did for our daughter, but it took a while and we really had to use very high doses. Our daughter doesn't have TS, and we never could figure out what caused hers.
harriswhistles 3 years ago
Hi, my son has this, and he has been on Vigabatrin for 2 days. Already, the spasms have subsided, but he is very sleepy. He is only taking 250 ml for the first week, and is very sleepy. I was wondering what your daughter was on.
LHampsonCyberEd123 2 years ago
I will pray for your son.
salvamg89 3 years ago 10
Hi....My son is 7 months old, and also has spasms like this.....but he's never been diagnosed with anything. How did you get your Dr.'s to listen to you? I just posted a video of my son on here....hoping that someone will have some answers. Thank you for posting yours. I'm scared out of my mind right now, as I watch all these videos.
Rachel
RachieGirl26 3 years ago
Hi My daughter just got diagnosed with infantile spasm on sunday. I took her to the Er when she did a few time saturday. Whne i went to the Er they did a lot of test and it came up normal. to be honesty if my daughter did not do the spasam in front of the doctor they would send me home. she takck the ACTH now for six weeks and we found out what going to happened. you shoud a go see a other doctor
BabyJihan 3 years ago
Hi, my son also has tuberous sclerosis and has epileptic seizures and also infantile spasms. I hope your little ones doing ok at the moment X
senoritabee 3 years ago
does this affect his development in the future??... My nephew just did a 1dayEEG and they detected he was having seizures but said they couldn't know what the problem was or anything for a while, and his seizures kind of look like that, and it usually happens when he's worked up or upset, his arm freezes and face distorts.
BookieBoo06 2 years ago
my son also so used the great med it worked for him in hours thank god my doc said 1 1/2 pill at first then she carefully decreased it by looking at his EEG's keep up the great work !! im part of thr tsc family too and we are strong god bless
ursweethunny 3 years ago
My heart breaks every time I watch these videos. Our daughter has seizures. They are a bit better now, after a few years of trying different seizure meds, and going on the Ketogenic Diet. But when she was little, she had spasms just like this.
Grahls 3 years ago
Thank you for posting this video, I am sure it is both education and helpful to many..
I really hope your son is doing better now.
Wishing you all the very best,
Chelle x
ChelleAmy 4 years ago
Praying for your sweet little boy.
Jassie26 4 years ago 2
I wish you all the best and you are in my prayers. May the Lord protect and save your shinnning star, your son. The struggle is going to be very frustrating but please never lose hope for many of are us standing by and rooting for you.
Good luck.
Gerrie
MySeizures 4 years ago 2
Thank you for posting the video. My son, Luca, died from complications of Tuberous Sclerosis (rhabdomyoma). I have a newborn daughter, and am glad to actually see what IS look like so I can be aware. I hope your precious boy responds to the medicine soon.
mom2lucabella 4 years ago 2
There is an acupressure point that is very famous for stopping convulsions. It is called Shui gou, Ren Zhong, Du 26, or GV 26. It is located on the philtrum, 1/3 the distance from the nose and the top of the lip. Give it a try if you wish, but make sure you talk to a qualified acupuncturist that specializes in pediatrics to locate the point correctly and apply the correct pressure so that you do not injure yourself or your child.
Harkannin 4 years ago
These definatly look like mild infantile spasms to me Our little one had them but more violent now thankfully under control using Vigabatrin.Hope you get control soon best of luck.
ziggy012 4 years ago
no he is not crying because he wants to be picked up he has tsc and is having a cluster of infantile spasms if you watched all of this video. he has seizures nearly everyday and I spend all day while my older kids are off at school holding him ,loving him and helping him along developmentally
mommasmith1977 4 years ago 2
That person obviously has not had a child with infantile spasms. Our little boy had clusters as well. They were identical to these your little boy is having. He has outgrown them (he is now 7). I hope your little boy is over them now. Vigabatrin/Sabril was a miracle drug until he did outgrow them though. Blessings to you and your family.
mspahr23 3 years ago
Bless his heart. So scary to watch and so sad for baby. My daughter has a genetic condition and had a grand mal seizure one time. It was such an awful thing and I can't imagine having to deal with seizures on a regular basis. Your little boy is ADORABLE. Hoping the meds work for him.
patyrish 4 years ago
This is heart breaking. My son has severe seizure disorders.I am in the process of making numerous vidoes of him seizing. He is being evaluated for hemispherectomy surgery. please visit my profile.
4stemcellresearch 4 years ago
my daughter had similar siezures when she was 4 monthes...i hope ur baby is doing better
wienerkabob 4 years ago
I am not familiar with TS, but my daughter had spasms just like this as a baby. She is almost 3 and has outgrown them (Thank God and knock wood). It is only tonight that I've ever seen other examples. I happened to see a Discovery Medical TV show and grabbed my husband - look that's exactly what Becca had. They called it infantile spasm. So now I've been surfing the web looking it up and seeing other kids do exactly what she did. Becca also has Down syndrome. Best wishes to you.
ElynnWQ 4 years ago
They are very common in Down's babies
teads613 4 years ago
poor thing, I'm so sorry thst he has to go through that, and at that early age.
crankyluv 4 years ago
It seems as if he knows whats going on and is concious, it seems to be scaring him and causing some discomfort. While his body does its spasms.
I'm just taking a guess.
Apocalypse89 4 years ago
Hmm... These are similar to the seizures caused by MoyaMoya... interesting. *Goes off to do research.* :) Good luck with medication for the little one, he's gorgeous.
xGothicallyxEmox 4 years ago
I am so sorry to see you and your little one go through that. I have three children with TSC have you heard of the TS Alliance?? They have a wonderful emailing list you could join and talk with other TS moms. I hope vigabatrin works for you. I will pray for you and your family :)
tsmomof2plus1 4 years ago